My MS Drug Decision Part III: What’s Next?

Today, in the conclusion of this three-part blog, I reveal the choice I have made about my next MS drug step, a decision I made with the help and support of my wife and my medical team.

I once again must disclaim in this blog that I am not endorsing any of the medications used for multiple sclerosis. The choice of taking or not taking a disease modifying therapy and which of the options available to take is one to be made with great care and thought. I will, however, say that like most parts of a life with MS, the decision can only be properly made by those who are well-informed. The simple fact that you are here — reading this post and the accompanying comments — makes a statement as to your commitment to stay informed.

This was not something I/we came to quickly. Only after doing much research and far more soul searching (and consultations with my docs) did we decide. There were many factors which contributed to this course (and I’ll explain; it is a course) of treatment.

Very high on our list of considerations was the out of pocket price I would be paying for any medication. Even with the best insurance I can buy in my state, our portion was anywhere from $6,500 to well above $9,000. Due to my prescription insurance’s rules, I am not eligible for any of the drug companies’ assistance programs. That said, one pharma company did offer to give me the drug free of charge (because of my “involvement in the MS community.” I read that as “you can influence people,” and that is well beyond acceptable to me — as I know it is to you. Please do not read that as backhand-to-forehead and “’Tis a far, far better thing I do…” I just cannot be a part of such dealings).

Price was not the only consideration — but those numbers get your attention pretty quickly.

Our imminent shift to my ancestral homeland also put a twist into the process. Getting my prescription medications from here to there in a timely fashion wouldn’t be an insurmountable hurdle — in fact, I’ll still have to obtain my symptom management meds — but it was an obstacle.

I want to speak “to camera” here and make sure everyone understands this: I believe that MS medications do work. I believe that the right med for the right course of MS and the right personal biology makes a difference in the rates of relapse, in the acuity of progression and the long-term course of this disease. I understand and believe that, no matter the other things I do (and I’ll go into detail), my multiple sclerosis will progress.

I hope it does not, but I expect that it will.

So, to that course of action…I have decided to actively — very actively — pursue complementary and alternative methods of healthcare to strengthen my overall health and wellness. Through diet, exercise, information, and research, I intend to make my mind, body, and spirit as strong as I can — not in spite of MS but rather with multiple sclerosis.

I’m not going to say that my attitude will beat MS. I don’t anticipate some physical or spiritual epiphany nor do I anticipate “curing” my disease with some fad diet or medical procedure. I simply intend to live with my MS…whatever that brings.

We intend to spend some of the money we would have shelled-out for meds on education, on help and on the things I will need to live this new decision. Physical therapy, occupational therapy, gym membership, more organic produce, “living well” programs, etc… are all going to cost money. We intend this period to be as active a course of treatment as meds would have been. I don’t expect them to be “disease modifying”… this is important for me to get across — particularly to those new to our pages.

The other point I’d like to stress is that this is not intended to be a lifetime decision for me. New (and better) meds are sure to be on the way. We will reevaluate this decision every step of the way and keep my docs up to speed as we go along. I have a new “baseline” MRI scheduled for the end of summer and we’ll switch to annual (from bi-annual) updates of that process. MRIs are expensive, but that’s where some of the savings will go as well.

Some will think I’m crazy for taking this step; some will think I’m crazy for not having taken it before. The truth of the matter is I probably am a bit crazy…but that has nothing to do with multiple sclerosis!

Feel free to comment, but remember to be respectful of other’s views in the comments. Take your shots at me, but NOT at those who support or belittle me.

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ABOUT THE AUTHOR

Trevis Gleason

Trevis L. Gleason is a food journalist and published author, an award-winning chef and culinary instructor who has taught at institutions such as Cornell University, New England Culinary Institute and...read more